[tinaanneb]

I have had what has been diagnosed as small fiber peripheral neuropathy in both my hands and feet for over 8 years now. I now feel pain EVERYWHERE. As I sit here writing, the fan in my room in going and the breeze hitting my skin on the back of my arms is burning. I take lots of meds, including lyrica and a narcotic everyday just to have some quality of life. Whenever I read about RSD it sounds more like me than what I have been told I have. Both diseases are very painful and both have people like me with no apparent reason for the illness - no car accident, surgeries, etc. I wondered if someone else might have been misdiagnosed like me. AND what can I do if I do have RSD that I am not already doing. My nerves are so hyper-sensitive that it is normal for me to survive through the day at level 5/6 in pain even with my meds. Any thoughts...?
Tina

[Bussey]

Hello,

You obviously are dealing with a lot of pain right now. Unfortunately, the symptoms that you describe, are characteristic of RSD. However, those symptoms may also be characteristic of another disorder, as well. Have you thought about getting a second opinion? Have you ever been seen by a neurologist, who specializes in the treatment of RSD?

RSD, usually develops after a limb has been injured, or surgery. For example, RSD may develop after suffering a broken bone. However, it can also develop, as a result of a minor injury, such as a scratch, or even a pinprick. In other cases, patients suffer from idiopathic RSD. Idiopathic means, of unknown cause.

Just prior to onset, I did not suffer an injury, and I had no surgeries performed. I simply woke up on September 1, 2003, with excruciating pain in my right hand! I also suffered from several other symptoms, all, for reasons unknown to me, at the time. I was definitively diagnosed in 2004.

Again, I suggest that you get a second opinion, from a Dr. who specializes in the treatment of RSD.

I wish you the best! Take care of yourself.

Bussey

[reruho]

Tina,
You are right about the possibility of being misdiagnosed. I read that RSD is often misdaignosed as many other disorders which results in a delay in the proper treatment. Bussey is right, try finding a doctor that specializes in RSD to evaluate you.

Finding a doctor is not always easy for us. I am not sure where you live but you can start by calling neurologists in your area and ask if they treat RSD patients. You might even call some pain management clinics ask them which neurologists treat RSD. Talk to you primary care doctor/ family doctor about a doctor that treats RSD. Sometimes we forget our primarys can be a great resource for referrals. It will also take some footwork to contact all the doctors that have treated you and have them fax copies of your records to the new doctors. The new doctor will need to see all the records to fully evaluate your case.

You might even want to sit down and develop a timeline of events and symptoms to give the doctor. Make a list of all the medications and treatments you have had and the results and side effects. I have been using Excel programs to keep track of all this stuff. It is so much easier to have it all written down for the doctors, so they can talk and not spend all their time writing. This way they can put notes on the sides of their copy of this information. I am a visual person and I can understand things better when I see it in front of me.

I was misdiagnosed for 20 years as having IBS and told to figure out how to live with it. It turns out I have a low functioning gallbaldder and I had one simple test confirm this 2 years ago. Doctor are very reluctant to change another doctor's diagnosis. I spent a couple of years of talking to doctors about this and just trying trying to get them to run some more tests. I am not sure if my current GI just ran the test to prove me wrong or because he thought I presented some good arguments. What really upsets me is the fact this test has been available almost 30 years, well within the timeframe of first presentation of symptoms.

Reta